Literature Review

A flight to the North Pole Fairfax County Times, Reston, VA; by Kristin Johnson; 12/12/25 Last Saturday morning [12/6], Gate D15 at Dulles Airport was filled with families wearing Christmas sweaters and pajamas. They were waiting for a 10 a.m. departure to the North Pole. The Fantasy Flight is a 30-minute plane ride that takes off annually on the first weekend in December. The event is for the families of children currently in hospice or long-term care. ... The mood at the gate is festive, but a little chaotic. The busyness helps to dull Tabitha Johnson’s grief. Her son died in hospice three weeks ago. She decided the family should still come. 

Adolescents' and young adults' perspectives on decision-making and the emotional experience of having advanced cancerJournal of Pain and Symptom Management; by Nelda Itzep, Jessica Moore, Colleen Gallagher, Michael Roth, Peyton Martin, Mike Hernandez, Karen M Moody; 12/25Adolescents and young adults (AYAs) with advanced cancer represent a unique and vulnerable population. Little is known about the optimal approach to support their medical decision-making needs... Most participants reported acceptance and peace with their illness, yet many struggled with changes in physical appearance, the unfairness of getting cancer, and angry feelings related to their illness. Participants also reported high levels of therapeutic alliance with their doctors. These AYAs reported remaining hopeful and future oriented despite their prognosis. They also reported a strong belief that AYAs should be involved in decision-making.

Pediatric imminent death donation: Is it ethical?Journal of Pain and Symptom Management; by Gabriel Chain, Laura Pucillo, Mindy Dickerman, Richard James, Stephen Dunn, Elissa G Miller; 12/25Imminent death donation (IDD) is a form of organ donation that would occur just prior to the withdrawal of life-sustaining technology (WOLST). While IDD may offer a valuable opportunity for organ donation, for example when donation after circulatory death (DCD) is not feasible, it raises significant ethical concerns, particularly in pediatric cases... Clinicians from critical care, transplant surgery, palliative care and our hospital ethics committee offer differing views on how to address [a complex case].

Hospice El Paso pediatric patient to spread joy with Toy Drive for local children ABC KIVA-7, El Paso, TX; by Armando Ramirez; 12/1/25 7-year-old Kenia Marisol Huerta Medina, a participant of Hospice El Paso's Butterfly Program, has a wish to help others this holiday season. According to Hospice El Paso, Kenia is battling diffuse intrinsic pontine glioma, a cancer that affects the central nervous system to include the brain and spinal cord. As apart of her holiday wish, Kenia is asking for Christmas toys and other gifts for undeserved children in the El Paso region.

5.2 consultation-Liaison perspectivesJournal of the American Academy of Child & Adolescent Psychiatry; by Julia A. Kearney;10/25Parents suffer loss and anticipatory grief, struggle with complex medical decision-making, and bear the primary burden of talking to their children about illness, death, and loss. Clinical intervention can: 1) improve communication around child prognosis and medical decision-making; 2) support parents in having open conversations with their children; and 3) directly assess and address parent mental health. Parents and caregivers appreciate resources to address their mental health in pediatric settings, need expertise from clinicians experienced in pediatric illness and palliative care, and need programs to overcome barriers such as parents’ unwillingness or inability to leave their child and the unpredictability of the child’s illness. While nothing can eliminate the suffering and grief of families facing a child’s terminal illness, clinicians can increase hope by helping enhance meaning, connection, trust, and love while reducing guilt and regret.  

Community puts together Christmas parade for 6-year-old in hospice care NBC WSAV-3, Savannah, GA; by Ava Cartes; 11/16/25 A Savannah community came together Saturday evening at a rally behind a little girl and her family. A six-year-old girl from the Willow Point neighborhood in Savannah recently entered hospice care, and after learning the news, her community came out to celebrate Christmas—her favorite holiday. Neighbors organized a display of Christmas lights and even a parade to show their support for the family.

The Valerie Fund pledges $3.5 million to establish new pediatric pain and palliative care program at Hackensack Meridian Joseph M. Sanzari Children’s Hospital News Wise, Hackensack, NJ; by Hackensack Meridian Health; 11/3/25 Hackensack Meridian Joseph M. Sanzari Children’s Hospital today announced a transformative, 5-year, $3.5 million commitment from The Valerie Fund to significantly expand its Pediatric Pain and Palliative Care Program. The landmark donation will establish The Valerie Fund Pediatric Pain and Palliative Care Program at the Joseph M. Sanzari Children’s Hospital, located at Hackensack University Medical Center in Hackensack, NJ, ... This new partnership will allow the hospital to care for more people annually, growing from approximately 1,750 to 3,500 patient visits. 

Clinician and parent perspectives on essential psychosocial care in pediatric cancerJAMA Pediatrics; by Kimberly S. Canter, Anne E. Kazak, Natalie Koskela-Staples, Michele A. Scialla, Kimberly Buff, Emily Pariseau, Victoria A. Sardi-Brown, Julia B. Tager, Lori Wiener; 10/25The Standards for Psychosocial Care for Children With Cancer and Their Families provide guidelines for evidence-based psychosocial care for children with cancer and their families. The Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) study extends the standards through innovative collaborative research between clinicians and patient and family advocates, with the goal of widespread clinical implementation of standards that clinicians and parents or caregivers agree to be priorities. The 3 standards prioritized by parents and clinicians in this study offer insight into shared priorities for psychosocial care in pediatric cancer. However, misalignment on other priority standards (parental mental health, palliative care, and neurocognitive monitoring) highlights the differences in perception between parents and clinicians. Areas lacking agreement are a stark reminder of potential challenges when working to meet the holistic needs of children with chronic diseases and their families, as clinicians and parents may not agree on which needs are most important.

After her son’s painful death, a Cheshire mother highlights Connecticut’s pediatric hospice gap New Haven Register, Norwalk, CT; by Cris Villalonga-Vivoni; 10/26/25 Carolyn Torello believes that no parent should outlive their children, yet that became her reality. ...  As his condition worsened, the family faced his impending death without the support of pediatric palliative or hospice care. No provider, she said, seemed to know how to help or where to begin. He died at 15 years old in 2021. ... In 2020, an estimated 7,800 children in Connecticut were living with complex medical conditions that limited their life expectancy and could have benefited from palliative or hospice care, according to data from the National Survey of Children's Health. ... Torello thinks that if Michael had access to hospice care, he could have died with greater dignity, and their family could have focused on simply being together. ... Efforts to create a more formalized pediatric palliative care system have been underway since 2024, led by a state-commissioned working group that will make recommendations to the legislature on potential reforms.

Perinatal bereavement rooms: A narrative review of physical space in perinatal griefArchives of Gynecology and Obstetrics; by Ruby Castilla-Puentes, Azul F. Isidoro, Alfonsina Orosito, Samantha Eaton, Manuela Goyeneche, Liliana González Cabrales, Gabriela Santaella; 9/25 Perinatal loss is a profoundly complex form of grief, often linked to heightened risk of prolonged bereavement and adverse mental health outcomes. Perinatal grief rooms—private, supportive spaces within healthcare settings—aim to help families process their loss, spend time with their baby, and create meaningful memories in a respectful environment. Despite increasing recognition of the importance of bereavement care, dedicated grief rooms remain under-researched and inconsistently implemented. Advancing this field will require rigorously designed studies, development of design standards, and collaborative partnerships among healthcare providers, researchers, policymakers, and design experts to ensure equitable access to therapeutic spaces for grieving families.Assistant Editor's note: It strikes me that those experiencing grief of any kind, not just perinatal grief, could benefit from a grief room--a private, comfortable, inviting space--where loved ones can be together and grieve. Many hospice in-patient facilities have such a room. Wouldn't it be wonderful if every hospital, nursing home, assisted living facility, etc., had a grief room?! Perhaps hospice organizations could explore a multi-facility collaboration to make that happen. 

Pediatric home-based palliative care and hospice: Characterizing and comparing the populationsJournal of Pain and Symptom Management; by Ben Reader, Sibelle Aurelie Yemele Kitio, Steven M Smith; 9/25Home-based palliative care (HBPC) and hospice programs offer support for children with complex life-shortening conditions. However, there is little comparison of the characteristics and care trajectories of children and young adults enrolled in HBPC versus hospice, particularly across different age groups. Of 113 participants, hospice recipients were younger (median 2 vs. 7 years; ...), more likely to have an oncologic diagnosis, and had a higher mortality during the study period (69.6% vs. 22.1%; ...). HBPC participants had more hospital admissions, longer inpatient stays, and more outpatient visits. Subgroup analyses of children ≥1 year revealed diagnosis and code status differences, with hospice participants more likely to have 'allow natural death' orders and experience a code status change. 

Chico nurses at Enloe Health to hold rally to protest closure of home health and hospice units National Nurses United; Press Release by the California Nurses Association/National Nurses United; 10/1/25 ... Nurses are calling on the hospital to protect the health of some of Chico’s most vulnerable patients and maintain the essential services and end-of-life care provided by these units.  “For years, Enloe hospice stood alone in providing care for underserved Medi-Cal patients and for our youngest, most fragile patients—children at the end of life,” said Ruby Khoury, registered nurse in the hospice unit. “A vital, compassionate service is being taken away, and a hospital that once led with dignity and inclusivity in hospice care now faces a painful void. We nurses demand that the home health and hospice units remain open. Otherwise, the most vulnerable will suffer first: children, Medi-Cal patients, families without resources.”